BENEFITING: NBIA DISORDERS ASSOCIATION
EVENT DATE: Aug 19, 2017
Please help us give the gift of hope to Elle and all children with her diagnosis by participating in the Ann Arbor 5k Super Run and donating to NBIA research.
Noelle is a true Superhero, she is a beautiful, five-year-old hug monster who befriends even the surliest of strangers. Despite her happy and loving disposition, she struggles with everyday tasks we take for granted... she is diagnosed with BPAN, an NBIA disorder.
Unfortunately, BPAN is predicted to steal her future. BPAN was only discovered in 2012 and there is no cure. With only 100 documented cases worldwide, the disease is not high on research lists.
The disease carries a devastating prognosis: childhood global developmental delays progress to a crippling, Parkinson’s-like movement disorder (dystonia) and cognitive decline during adolescence or early adulthood. Life expectancy is shortened, with final years that involve wheel chairs, feeding tubes and around-the-clock care.
All the money that will be raised will go directly to the NBIA Disorders Association. It is the only patient organization in the United States dedicated to finding a cure for NBIA disorders. It is a non-profit, 501(c) (3) organization, founded in 1996 as the nation’s leader and expert in advancing awareness and research into these rare disorders.